I am a newbie to the gluten-free diet. (1/1/14) I see that I should also pursue a low iodine and low salicylate diet as well.
I was diagnosed with DH in 2010.
I too, am skeptical whether I truly am suffering from DH.
My break outs usually are bilateral in location; developing on both knees, elbows, arm pits, forehead, sides of my neck, mid-back, buttocks and most recently my fingers and genital area tissues. Ouch!
The unbelievable burning itch right away was what sent me to the Dr. in the first place to begin my guinea pig days on the road to diagnosis.
A biopsy was done and lots of blood work every couple of months for over a year.
Steriod creams intensified the burning rashes.
I tried one Rx, which did not help at all. I can't recall the name of it right now.
After testing 50 - 150 mg of Dapsone daily; my Dermatologist and I found a comfortable does of 100 mg per day.
That dose worked like a dream for me! It controlled all break-outs.
Intense stress did cause flare-ups while on the Rx.
If I forgot the take a dose, I would experience symptoms by the end of the day.
My Derm. was always worried about lethargy and neuropathy, which I never suffered from.
My iron level was low, but not dangerously low for a woman of my age.
The gold ticket that spurred getting off the Dapsone was my oxygen saturation level.
As soon as I began taking Dapsone, my O2 was 90-92.
Prior to taking Dapsone, I have no idea what my O2 level was.
My primary physician and Derm. decided that the Dapsone was causing damge to my red blood cells; which in turn were not sufficiently carrying oxygen to tissues in my body.
A blood gas draw on 12/17/13 confirmed that my oxygen level was even worse . . . around 86.
I have no asthma or breathing difficulties at all.
So, as of 1/1/14; I quit taking Dapsone cold turkey and began a gluten-free diet.
After reading posts on this forum, I see that I have a long road ahead of me.
This moring, I woke up with horrendous burning rashes in all of the areas described above.
My only hope in this miserable lifestyle change is that I truly am symptom free one day.
Any and all scientific findings, support or advice are welcome!
Well, it seems you doubt your dx.
If you've been eating gluten for three years while on dapsone you could go in for Celiac antibody testing. You could also try a dh punch biopsy, if you haven't been on steroids. I have no idea if dapsone affects biopsy results...you'd have to ask your derm.
One week off gluten probably won't change things, but I probably wouldn't go past two weeks and try antibody testing. Be warned, many dh sufferers test falsely negative in both antibody and biopsy...so, be prepared to trial gluten-free to see what happens. But if it comes up +, maybe that will help settle the dx in your mind.
My personal opinion is that any negatives or inconveniences of the gluten-free diet are negated by the threat of that damn rash....so, given the alternative I'll stay gluten-free.
Ice packs, mild moisturizers (I like VaniCream), clean gluten-free eating...it'll get you started. I'd try low iodine (which does suck, I agree) to see if it helps. Sure helped me, and I was thankful at the time.